February 24, 2011

Tim's post, "Ask a Diabetic Rock Star." from across the puddle at Shoot Up or Put Up is about Brett Ryan Stewart who Tim calls, "is a gifted young, up and coming American musician who writes and plays some good music described as “indie/pop peppered with a southern influence”." Now I am not one to give Tim all that much respect but when I read this exchange I had to go check Brett Ryan out.

Tim: Describe your music in 3 words.
Brett: Not Justin Bieber.

Tim was right. (I know who would have thought it?) Good stuff. There is an album coming out Feb 28. So now is a good time to check out some new music.

Turns out young Mr Steward grew up in the Philly area. Small world when you hear about your neighbors from a crazy Britt.

February 18, 2011

I managed to cut the cord and keep the number - the land line phone cord while keeping the number we have shared for years. It took a few steps but the savings are worth it.

I know it worked because CVS just called to tell me Connor’s prescriptions were due to renew. They only know one number - our land line. Figures diabetes would be the first message through the crazy gyrations it took and at the same time it makes it clear the value in keeping that old number.

While it is kind of archaic in a mobile world we want a land line. If for nothing else to send faxes and getting calls from places that have the number - having a land line in the house has value. It should be the number everyone from family to CVS knows. The key is to do it both inexpensively and in a way that protects that number if the new service provider were to disappear in the changing telecom world.

While you can keep you number with them, the name brand land line and voice over internet services from MaBell, Comcast and Vonnage cost $25 to $30. That is more per month than I want to pay. Magic Jack is cheap but requires a commuter running all the time. CNET clued me into a device called NetTALK. Like Magic Jack is provides real cheap voice over internet and it connect directly to the home network - no computer required. I bought one. A year of phone service is about what Comcast was charging for a month. It comes with a new phone number and doesn’t support porting the old. So how to keep the number?

Google Voice is a brilliant service that creates a virtual phone number that can do all kinds of stupid phone tricks, like forward calls to multiple lines and morphing voice messages into text and sending them as an email. Just last moth they started porting cell numbers into Google Voice.

There in lies the magic.

I ported our land line to an ATT Go phone, minimum plan $15 bucks for 30 days. We had a old cell phone that worked with the line. It took a few days to port the number over to ATT from Comcast. Then I ported the Go Phone to Google Voice for $20. There is a little art to that as the ATT account number and line number are not the same thing and Google needs both. I found a post on Google Voice support forums that said just call ATT they will give you the actual account number. Sure enough. It takes a day to post the number out of ATT and into Google Voice.

So a few few bucks invested and my good old land line is now a virtual number at Google Voice ringing the house phone running on NetTALK. I can point the number to ring any phone number or numbers I want.

With the NetTalk device and fees for the porting tricks we will break even in about three months. Next year the land line cost what we were paying every month. I like that but then I can be cheap.

Now if there were just a Google Pancreas service I could cut the pump cords too.

February 4, 2011

Roche offered an opportunity to hear the results of a new research study on T2 and self monitoring. Dr. Andreas Stuhr was going to be presenting and being a fan of Andreas, I joining the conference call this afternoon.

This was a study of type 2 diabetics who do not use insulin. There were two groups studied. Both groups had similar access to testing equipment, doctors and heath care visits. The difference was one group used a paper based tool to put the data from blood test into context. Both groups lowered their A1C. So being in a study and having access to a meter and doctors lowers A1C. The group with a structure tool to collect data and talk about it with their health care team had a more significant drop in A1c than the control.

The tool is simply a paper form. It is available free here. You don’t need a Roche meter to use it but you need a meter. The tool itself is not the conversations with a health care provider. It may be a place to start.

So while it sounds a lot like "we hold there truths to be self evident" putting context around the data you collect can provide better results.

Context Matters.

/begin disclosureI have been to Roche’s diabetes social media summits. They pay my way. I speak my mind. I suspect there are still photos of my sign from last summer's conference floating around with circles and arrows and a paragraph on the back to be used as evidence against me. (Feel free to link the photo in a comment if you have it, or Alice's Restaurant for the circles and arrows. As a hint the sign was two words and the words had the same first letters as Blood Sugar.) Roche invited me back - go figure. They doesn’t push product info at us. So much so that as a group we expressed and interest in hearing news from them. This call to the social media summit group was part of the sharing we asked for.
/end disclosure

The Capital Chapter of the JDRF brought together a collection of professionals who shared the research they are doing. In most cases they also shared a personal connection that drive them to try to improve the lives of people living with type 1 diabetes.

In addition to the speakers there were a number of tables where advocates, pharma and researches could present there work in a trade show like environment. The organizers had a full kids program to allow families to participate without kids becoming overwhelmed by the scholar’s presentations.

For those with the experience, it was like a day at Friends For Life where you do all the research track presentation while the kids hung out (with supervision.) There was even a similar buffet lunch experience - the kids ate chicken fingers.

There were maybe three to four hundred people there. Pretty impressive for a cold Saturday in January.

I was happy to join with a number of other bloggers and made my first feeble attempt at tweeting in real time. Here the thing, I don’t quite know how to condense complex ideas into 140 character synopsis and both convey meaning and still pay attention. I don’t think I did either well - fortunately that wasn’t the point of the day.

I was very happy to see a JDRF local chapter take on such a significant roll in supporting the families who walk for JDRF. I was some what gladly drove three hours to attend and was impressed by the researches both in their work an in their passion driven by personal connections to type 1. I think that connection gets lost. I find it compelling to know the guy running the study at BU on the bionic pancreas is motivated to make his child life better.

It was also enlightening if not encouraging to hear about the process of working with the FDA. The FDA is cautious. They are slow. They are careful. That caution can be seen as slowing down the process of getting advances in care to the market. However I think it is important to know about how the FDA approaches risk. It is good to know the JDRF is in regular contact working with the FDA to keep the risks of simply living with diabetes on the table.

I think it is appropriate and useful for the JDRF to work in conjunction with industry to help promising advancements get through that review process. Particularly those products that focus more on the smaller part of the diabetes market, those living with type 1. In that context events such as this help clarify why JDRF should be working with the for profit side of the industry. Advances need to come to market.

I think that understanding the process of research, commercialization and approval is important. I think good communication helps both develop support for innovation over the long term and inspiration to do better with what we have in the short term.

I was very pleasantly surprised by the scope and quality of the Capital Chapter’s Research Summit. I am thankful for their hard work. I am appreciative of the sponsors support. I think the Capital Chapter of JDRF offers a model for other chapters looking to engage with those living with type 1.